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Statistical Data Germany 2013: People in need of care divided according to types of care. 4 2.5 million people in need of care Informal care: 1.76 million people (70%) Family caregivers unassisted: 1.18 million people Together with mobile nursing services: 576,000 people Residential care: 743,000 people (30%) Dr. Martin PallaufOct 5, 2015

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Impact on Practice Informal Care (Blome, Alber et al. 2008; Wingenfeld, Büscher et al. 2008; Hoff 2006; Schattovits 2000)  A new definition of `need of care´ is necessary – in social and health politics.  Increase in very elderly people – decrease in caring family members.  Within four generations mostly two generations are in need of care.  Larger distances and relationship varieties increase burdens of caregivers.  Political and social conditions for family caregivers claim high personal and financial sacrifices. 5 Dr. Martin PallaufOct 5, 2015

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Research Project 3 research groups:  First step: 13 informal caregivers of non-institutionalized older family members are interviewed. All caregivers are sandwiched between own children and aging family members.  Second step: 13 informal caregivers of older family members in residential care are interviewed.  Third step: the data obtained in steps one and two are discussed with nine different experts. 6 Dr. Martin PallaufOct 5, 2015

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Results – Research Group 1 7 CategoriesSubcategories 1Subcategories 2 Intergenerational relationship Children in debt to their parentsFeel guilty / obligation to care / to give sth. back. Effects on family relations Strong conflicts with elderly family members in need of care/ careless towards own family Parents obstruct care / difficulties to decide for their parents, to make decisions/ little support from family / married life is neglected / children are disadvantaged. Burdens of caregivers Permanent stress and strain / fear of the future Burdens caused by multiple roles in life / no recovery / financial problems / can´t satisfy the expectations / long for the end. Changes in own life High personal sacrifices and losses Sacrifice of personal needs / financial and social restrictions / lack of spontaneity / restrictions in working life / conflicts with social and health authorities Dr. Martin PallaufOct 5, 2015

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Results – Research Group 2 8 CategoriesSubcategories 1Subcategories 2 Intent for residential care Exhaustion of the caregiver / better care for elderly (parents) Workplace, social and personal burdens / deterioration of health / failure of alternative care- systems / third-party advices. Emotional effects Strong feelings of guilt / as time passed by the situation improved Conflicts with elderly persons in residential care/ taking parents back home/mental-emotional stress of former caregivers/mental illness of former caregivers/mental degeneration and increasing morbidity helped managing the situation Social effects More time for personal needs / high personal restrictions Less psychological burdens / less burdens in daily life / more freedom / more social contacts / financial losses / personal and health restrictions / conflicts and disputes with care institutions, official sponsors and authorities Dr. Martin PallaufOct 5, 2015

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Results – Research Group 3 / Experts 9 CategoriesSubcategories 1Subcategories 2 Conflicts of caregivers Psychological conflicts / fear of the future Burdens caused by feelings of guilt / decision conflicts / disputes in the family / fear of social strains / fear of financial conflicts. Burdens of family caregivers Family caregivers’ exhaustion / psychological strain Excessive demands on family caregivers / lack of support and advice / conflicts with caring partners and institutions / long-term stress / Structural aspects Lack of advice / inadequacies in structures and social, political and health environments Need for information and educational work / excessively high requirements for official caregivers / social and health policies don´t facilitate better care and support systems Dr. Martin PallaufOct 5, 2015

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Overview of Findings 1. How do people experience burdens of caring for their elderly family members? Long-term stress and strain – long for the end; can´t satisfy their own or expectations of others; confronted with decision-making; confronted with feelings of guilt; obligation towards older family members; financial loss; restrictions and worries; no support and advice. 2. What impact has care-giving on personal relationships? Whole family is affected; feelings of guilt; conflicts and arguments; own needs and wishes are not compatible with those of other family members; paternalistic decision-making happens daily – these decisions are very difficult to take; as the disease progresses paternalistic decisions will come easier; more time for privacy. 10 Dr. Martin PallaufOct 5, 2015